By Sarah Bonnema

For the Salisbury Post

2023 was supposed to be Carol Knickerbocker’s year. It wasn’t.

But 2024 is off to a good start: she’s cancer-free, after her Stage 3 rectal cancer tumor “melted away” with a promising new treatment that shocked her medical team. She’s recovered from the specialized surgeries that took two surgeons and a robot. And she’s still here, living out her purpose: “to take care of my granddaughter and my family, and to prosper.”

What helped save her life? A treatment approach that’s earned four Novant Health cancer centers a rare seal of approval from the National Accreditation Program for Rectal Cancer (NAPRC) — and a team that works across the state to help rectal cancer patients like Knickerbocker receive the latest evidence-based care.

“A lot going on”

Knickerbocker, 53, grew up in North Carolina and lives near Mooresville, “out in the country,” as she put it. She has a big family with four adult children, 15 grandchildren and a husband who is “always by my side.”

In September 2021, one of her daughters passed away from a blood disease, leaving behind her 8-year-old daughter. Overnight, Knickerbocker and her husband became the primary caregivers for their granddaughter.

They had barely begun to process this when 2022 began. During that year, Knickerbocker lost both her mom and her 14-year-old granddaughter.

“We had a lot going on,” Knickerbocker said. “We were like, ‘2023 is going to be our year.’”

Just five days into the year, this hope was put to the test.

A colonoscopy — and hard news

Knickerbocker had been having mild rectal bleeding. She had assumed the cause was hemorrhoids (a swelling of veins or blood vessels inside and around the anus and lower rectum that can sometimes cause mild bleeding). But rectal bleeding can also be a symptom of colon cancer — one doctors say you should always investigate.

So on Jan. 5, Knickerbocker went in for a colonoscopy. As she came out of anesthesia, she overheard the doctor tell her husband that he’d found cancer.

“I couldn’t stop crying,” Knickerbocker said. “I was just hysterical.” Eventually, she said, “I got calmed down and said, ‘OK, well, where do we go from here?’”

She was referred to Dr. William Brinkley of Novant Health Cancer Institute – Rowan in Salisbury, who has been treating cancer patients for 25 years. Brinkley knows that the first visit to an oncologist can be overwhelming. And he did something Knickerbocker will never forget: “He held my hand the whole time we were sitting in the office together,” Knickerbocker said. “He made me feel so at ease.”

Brinkley explained the next step: learning how much cancer she had, and where it was in her body (also known as “staging,”) which affects prognosis and treatment options. He also told her he wouldn’t be the only doctor working on her case.

A team approach

When he started in oncology in the late 1990s, treatment options were “simpler,” Brinkley said: Chemotherapy, radiation, maybe surgery. “Once you exhausted one or two treatments, that was all you had to offer the patient.”

Now, however, treatments can be personalized to a person’s genetics, with new options emerging all the time. This makes for better outcomes for patients — and more complex decisions for those who treat them.

Enter: the Rectal Cancer Tumor Board, part of the Novant Health Cancer Institute.

This group of surgeons, oncologists, radiation oncologists, pathologists, radiologists, geneticists and cancer navigators work hard to keep up with the rapid developments in the way their fields treat rectal cancer. Then, each Thursday morning, they meet to discuss new and existing rectal cancer patients from across the state who are being served by the institute.

As a group, they examine each patient’s case. Then, the discussion begins: how to treat this patient? Are there new treatments that they should consider, given this patient’s unique circumstances and genetic makeup?

“Everyone puts in their two cents. If we aren’t in agreement, we review the literature and our own experiences to then make a unified plan,” Dr. David Hiller of Novant Health Colon & Rectal Clinic – Clemmons said. Hiller is a colorectal surgeon and the director of Novant Health’s rectal cancer program.

“Then when we come to the patient we say, ‘Here’s what the 15 of us have said, and this is our plan.’ The idea is that rectal cancer is not solved by one physician or one individual. It’s a team approach.”

The benefits

This means that as patients make some of the toughest decisions of their lives, they’re guided by a team of experts — and they don’t have to coordinate all the specialists themselves, hoping they remember the details correctly.

“When they come in to see any one of us and we say, ‘I’ve already read and heard everything about your cancer. I want to hear what you have to tell me — I want to hear your story,’ it feels more personal to them,” Hiller said. “You can just see how much more relaxed and comfortable they are. In a scary and dangerous situation, they feel like they’re being taken care of.”

Another bonus? Although experts from across the state were weighing in on Knickerbocker’s case, she could receive almost all of her care within 30 minutes of her home.

A genetic condition

Knickerbocker’s rectal cancer was Stage 3, which means it had spread to nearby lymph nodes.

Based on her pathology report, the tumor board recommended genetic testing. As they had suspected, she had a genetic abnormality called Lynch syndrome, which meant that she would have an up to 80% chance of developing colon cancer and an up to 60% chance of developing ovarian cancer in her lifetime. She also had another genetic abnormality.

Doctors typically recommend that patients with this diagnosis have their entire colon (lower intestine) and rectum removed, as well as their uterus and ovaries. But before they could remove anything, Knickerbocker’s cancer needed to be treated.

And Brinkley and Hiller had a bold proposal.

A new treatment

At a 2022 conference, Brinkley and Hiller had heard about a new treatment for rectal cancer patients with the same abnormality as Knickerbocker. The results were exciting: 100% of the patients who received the treatment saw their rectal cancer completely disappear without surgery, chemotherapy or radiation.

However, fewer than 20 patients were in the original study.

“Everyone said, ‘Holy cow,’” Hiller said about hearing the results. “But just because it’s new and shiny doesn’t mean it’s safe for everyone. Are we all OK doing something that isn’t textbook?”

After debate, the Tumor Board decided that Brinkley could offer it to Knickerbocker as an option. He explained that it was still experimental, but Knickerbocker felt up for the challenge.

“I just said, ‘You know what, I’ll give it a shot,’” Knickerbocker said. “I thought maybe I could be that one person that could finish the treatment and have a good outcome out of it.”

Or the 19th.

Beginning immunotherapy

The treatment is called immunotherapy. The idea, Brinkley said, is that it boosts your body’s immune system, helping it find and attack your cancer cells. This is different from chemotherapy, which uses drugs to kill the cancer cells, and radiation, which uses a targeted beam to kill cancer cells.

Knickerbocker received immunotherapy as a 30-minute IV treatment every three weeks. She said the treatment made her tired, but otherwise, didn’t have bad side effects — especially when she compared it to the experiences of friends who had done chemotherapy.

She was thankful to avoid looking and feeling ill, especially since her granddaughter was watching. “She was scared that she was going to lose me too like she lost her mommy.”

Although immunotherapy is typically well-tolerated, patients are monitored for inflammation (a possible side effect). Three months into her planned six months of treatment, Knickerbocker began to experience muscle pain and joint aches, so Brinkley paused the treatment and did an MRI — just to see how everything looked.

What he saw next shocked him: Her tumor was gone.

“She literally only got about half the treatment — but there was no evidence of disease,” Brinkley said. “She had the best response she could possibly have.”

Time for surgery

She was cancer-free — but wasn’t done yet.

Because of her Lynch syndrome, she had a very high chance of having colon, endometrial and ovarian cancer. There was also a chance of rectal cancer recurrence. Hiller told her she could hope for the best, or remove her colon, rectum and ovaries and know for sure that she wouldn’t get cancer in those areas. Doctors also recommend removing the uterus, but Knickerbocker had already had a hysterectomy, so she was ahead of the game there.

Thinking of her granddaughter, Knickerbocker decided to play it safe and have the surgery.

So Hiller — who Knickerbocker calls her “cowboy surgeon” due to his love of Tecovas boots — expanded the team even further, teaming up with gynecologic oncologist Dr. Elizabeth Skinner of Novant Health Cancer Institute Forsyth in Winston-Salem and a da Vinci robot to help them make the smallest incisions possible.

In the ultimate “2 for 1” deal, Skinner took out Knickerbocker’s ovaries and Hiller performed a J-pouch (or IPAA) surgery, which removes a patient’s colon and rectum and creates an “artificial rectum” in the pelvis, allowing patient to eliminate waste without needing a permanent opening for an ostomy bag in their abdomen wall.

“We coordinated our surgeries together using the same incisions and same equipment,” Hiller said. “So when she wakes up, everything’s done.”

The J-pouch surgery required Knickerbocker to have a temporary ostomy bag while her pelvis healed from all the reconstructive work. Three months later, Knickerbocker was healed and Hiller reversed that.

Now, Knickerbocker said, she is pretty much back to normal, minus some minor bowel issues from her surgery and a new thyroid condition that developed as a result of immunotherapy. “But I’ll handle that, because I am cancer-free.” She will stay closely monitored, but so far, her team said, everything is looking good.

A new year and a new lease on life

It “was absolutely the longest year of my life,” Knickerbocker said. “There were days when I just wanted to give up, I’ll be honest with you.” She credits her family for bringing her through it — especially her husband, who pushed her to get the colonoscopy that saved her life and accompanied her to every appointment.

And she’s feeling good about 2024 — and beyond.

“I’m glad to be cancer-free, and I’m looking forward to many more years to see my granddaughter grow up,” Knickerbocker said. “I feel a real sense of purpose to be here and be a good influence on my granddaughter.”

Thanks to her team and the Rectal Cancer Tumor Board, she can.